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⚔️ | Refractory AE
🔒 | @arwe_nessa
Echoes of a fading mind. 🧠
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Today is Severe ME/CFS Awareness Day.

Today, I want to speak about the person behind the illness — my husband, Austin.

Severe ME/CFS is not simply being tired.

It can turn a life that once felt ordinary into something incredibly small. Things most people do without thinking — talking, walking, looking at a screen, taking a shower, spending time with the people you love — can become enormous physical challenges.

But for Austin, there is another battle happening at the same time.

He also lives with autoimmune encephalitis, and the inflammation in his brain has taken a lot from him.

Sometimes, it affects his memory.
Sometimes, his ability to think and process.
Sometimes, his energy and ability to communicate.

And sometimes, painfully, I can see pieces of his personality becoming harder for him to reach.

That is one of the hardest things to explain to people.

Because when you are a caretaker, you don't only watch someone become physically limited.

You sometimes watch the person you know so well become harder to recognize.

You remember how he used to be. You remember his reactions, his thoughts, his humor, his energy, the little things that make him him. And then there are days when the inflammation takes some of those things away.

But I know he is still in there.

Austin is not his illnesses.

He is not the brain inflammation.
He is not the exhaustion.
He is not the symptoms that have stolen pieces of his life.

He is my husband.

And I will keep looking for him underneath all of this.

As his caretaker, I have learned that caregiving isn't always about fixing something. Sometimes there is nothing I can fix.

Sometimes it means protecting his energy.

Sometimes it means helping him through a day when his brain and body simply won't cooperate.

Sometimes it means explaining to others why he cannot do something.

Sometimes it means grieving the things we have lost while still being grateful for the moments we do have.

And sometimes it simply means staying.

I wish more people understood that severe ME/CFS is not laziness, weakness, or a lack of trying.

Continued in the comments...

#mecfs #awareness #chronicillness #severe #autoimmuneencephalitis
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Some storms test you. Others reveal who you truly are.

Stand firm like Yggdrasil. Bend, but never break.
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#norsepagan #vikinglifestyle #stoicism #naturelover❤️ #yggdrasil
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I know what it means to be feared for wounds no one can see.

Like Fenrir, I have been judged before my story was ever heard.
Chained by grief.
Bound by loss.
Marked by battles that never left scars on my skin.

They believed the chains would tame me.
They didn't understand...

A wolf does not forget who it is.

I carry the weight of my past, but I refuse to let it define my future. Every heartbreak became another link I learned to break. Every fall taught me to rise with sharper teeth and a steadier heart.

I am not the monster my pain tried to create.

I am the survivor who learned that even in darkness, strength is born.

And when the day comes that these chains finally break,
I will not run from who I am.

I will become it.

🐺🖤
#Fenrir #norsemythology #riseagain #strength #healing
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